"always smiling and always will"...a moto of mine that has stuck with me for years. Loving life since my transplant! Taking on various challenges from the Bupa Great South Run; UK, European & World Transplant Games in various sports; travelling the globe & sailing in the Clipper 11-12 Race. This year competing with Team GB in the World Transplant Games, South Africa

Jussie sails with Clipper 11-12

I sailed the last leg (8) in 2012 - USA,Nova Scotia,Ireland,Netherlands & UK. Travelling 4,000 miles, approx 22 days at sea, with 4 races in this leg.

Sunday, 21 September 2014

My life has rushed past and it's been like a roller coaster. I'm updating over the last few months since my last journal on Rat Race (May) + Brentwood half marathon (March). To which I wrote a combined and lengthy blog. I always have the intention to do short journals - but somehow the words keep flowing and this one is probably worthy of a cuppa and a few dunking biscuits or a glass of something nice ;)

My life has been consumed with working, voluntary work, radio slots on BBC Essex as a newspaper reviewer, training, hospital visits and much more. A change in medications since two infections were found in the bronchioles of my airways requiring me to take nebulisers twice a day permanently.

It's bizarre as I was feeling more breathless since before the Brentwood half marathon in March and even from the year prior. Not to be grim...but I was bringing up black stuff from my lungs and blowing out the same also from my nose. I did query this last year but as no changes in my lung function or changes from x -rays/tests at hospitals...nothing was done. I guess, it's get to the point when we say we know our own bodies, and I KNEW this was wrong! But, nothing was still found or the fact I was unable to give a sputum sample on demand. I did keep pushing at hospital and had a scan of my sinuses and lungs and yet nothing was found. So, technically on paper I was deemed fit and well. Yet, I knew otherwise. Finally, I managed to get a sample to my hospital and to cut a long story short was informed that I actually had two infections:- pseudomonas and candida.

I remember I was told a long time ago if I ever had pseudomonas that I would need nebs indefinitely. I guess now 8 years post transplant (July 9th this year), that I have been lucky even with my blips on/off. I was hoping it would be a short term thing - but when I was informed, it was not so. Ok, so be it was my initial reaction - not a lot I can do about it. I did start on antibiotics straight away for about 2 weeks before I started the nebulisers. It was not a smooth journey and it did cause me a lot of stress getting the right machine/drugs to go with it. And getting this agreed via my GP/Hospital a bit of a battle who was going to supply me the medications. Blah Blah........ after bursting into tears at hospital as I was showed what to do and realising wearing a mask reminding the days I needed a mask for oxygen. It initially was very overwhelming. However, I know how I roll - fall down, then bounce back up!

And I did! After getting a portable nebuliser machine and the medications and bits needed to make one of the drugs (needle/syringes) the only way was UP. It's like brushing my teeth - just an additional routine to my life now with the other aspects I need to do. Moving forward some weeks now - it's all good. It is a nuisance sometimes to do, but, if it keeps me alive longer and helps my lungs, then YES I am going to do this!!

Above a photo of the new drugs and bits needed to nebulise in the morning and night. And below a no make up selfie wearing one of the masks whilst inhaling salbutamol to open up my airways before mixing the colomycin the main drug to help my lungs.

So putting the aside my blip and now the ongoing nebs - time to relay some amazing news. My journey is always filled of gratitude daily and July this year I celebrated 8 years post my transplant! I still feel like every day is a blessing and I wish I was able to thank the man who agreed to organ donation and gave me life after his.

It was really nice to have some friends and my family at a local restaurant for good food and fun. I had arranged party bags for all the guests and a very special cake was made too. It was a shape as double lungs!

Let the fun begin....

The cake is all mine :)

I wanted the lunch/afternoon to be enjoyable for one and all and as well as the party bags/fun there were hats, masks, and masks to create your own designs on. I also planned secret missions and informed people prior to my function. Thankfully my friends don't mind a giggle and all succeeded extremely well. For example one friend I asked to get up and sing a song about fish, another to say she worked in a chicken factory plucking chickens and do an impersonation of one. They were hilarious........something I guess you had to be there to see it.

and who is behind the masks ;)

So I have updated on my health and my 8th year party - now to update with my usual fitness shenanigans.

I have maintained my fitness with the usual Essex Boot Camp and various things here and there and recently I did a challenge called, The Nuts. I initially signed up for 21k with 100 obstacles in each lap. Basically repeat the lap (7k) 3 times. However, I only wanted to do two laps but it had sold out. So went for three knowing would do two ;)

However, on the day it was more about having fun and I could have gone round a second time, but after over 3 hours I was feeling content. I didn't really want to over push and allowed myself to settle for this, then freshen up and wait for my other friends to finish.

working it ;)

Upside number - Oh dear read below.....

I asked when this number transfer was being done - if it was the right way up and told yes. Urm....I felt so stupid when saw afterwards that it so wasn't! Oh well - some of the people helping/working said not to worry when I would be upside down in the mud - then I will be the correct way up. Haha!! Think I will just stay upright as much as possible ;)

Here I am with some other booties:- Rhian, Mandy, Hayley, and Carly. All clean happy and smiley.

The being clean didn't last long and I probably got the muddiest that I have ever been doing any event. I tried much before and even some water obstacles - which I normally struggle with as the coldness of the water affects my breathing. So looking like a sludge of mud and rinsing some of it away from entering the streams/rivers..the final captioned photo is here underneath.

When I got home the mud was stuck like glue to my body and hair, but probably the best facial and pampering mud treatment I've had too.

Now all that is left to mention about my final arrangements for my trip to Australia competing as an international guest in their National Transplant Games. After many car boot sales and an empty/de-cluttered flat and funds raised - I am ready for this venture. I will be competing in:- shot put, discus, 3k fast walk, lawn bowls, 100m sprint and 4 x 100m relay race. I haven't sprinted for about 3 years and a challenge to myself if I could do this again. I gave up as my breathing recovery afterwards was horrendous. I have been 50/50 about sprinting again, but my mindset is now that I am and I will! I have only practised twice doing a 100m sprint but with training building up to this again over the last 4-6 weeks. I realise it is not long but my general fitness with the bootcamp has surely helped me. And as they say, what will will be. I am by no means the fastest sprinter but even if I get a PB that is GOLD to me. Being alive is a winner too, anything else is a bonus.

This is the furthest that I have been post my transplant and with two long haul flights to get into Melbourne. The quietest my social networking will ever be ;) but when back on wi -fi ......you will hear from me.

I guess that's a wrap and my next journal will be the chapter about Australia!!! So, keep well everyone and smiling. I will also be thinking of some of my friends whose health is not the best and some needing transplants. I realise I am lucky at the moment and things could change, but, I am doing what I can to keep raising awareness of the beauty that is Organ Donation. xx

Monday, 19 May 2014

Here the story begins of a feat overcoming 26 miles divided in half as two separate ventures/challenges. Adversity and attitude wins. The first is of a plight of a young girl that I was touched by as many others who partake in Essex Boot Camp. A young girl called Lily fighting a very rare form of cancer called, Neuroblastoma. At least, I had my childhood illness free and enjoyed life until around 21 when I was sick for around 10 years before my rare disease was diagnosed, Lymphangioleiomyomatosis (LAM).

Running is like my hate...my fear and something almost impossible for me to do. Funds were being raised for Lily and I decided to split mine between Lily's charity and LAM Action. I am happy I raised that just under £500 for each charity.

My training started last year ('13) and I was trying to build up running very slowly with walking. After about 18 years I ran my first mile non stop in November '13 at a Bentwater's all day boot camp (EBC event). It felt truly amazing!! I started to go out 2-3 times a week if I could and build up the distance.

Below is the adorable Lily that around 200 fellow Essex Boot Camp participants ran for at the Brentwood half marathon.

It seemed a miracle was unfolding in-front of my very eyes and I was overwhelmed when one day I managed 6 miles non stop. Ok, at a snails pace but a breakthrough for me. But, as in life not everything runs smoothly and I was started to feel unwell in February. I was getting more breathless on attempting to run my snails pace and not to be grim but black/flaky mucus was coming out of my nose. I knew something was wrong inside. But, I had no temperature and my lung function was not dropping. I guess, I was getting frustrated with my own situation and was barely able to do a mile without being breathless again. It's pretty standard for me to me breathless when running and I have accepted that - so I walk when I need too. I was thinking maybe my secondary condition was starting to play havoc inside, Obliterative Bronchiolitis. I have since had more regular hospital visits and just awaiting results from a scan of my lungs and sinus. So...much rest was needed and I hardly was able to train or go to many boot sessions. But, I am NOT a quitter and knew I would still turn up on the day.

All smiles here though as I am about to embark on 13 miles.

Even though I did the Brentwood half, if I'm honest I always smile in photos - but inside is a different story. I am not a runner and never will be a runner, but. my determination is such I start and I shall finish - however that may be. As, my training had reverted back to square one. I knew that for this event I would try and jog/walk as much as I could, and then simply walk the rest. I am happy I had Jade as below who stayed with me the whole duration and also my friend Tom.

Here we all go!!!!!!!!!!

I think I managed about 1.5 as a slow run with short bursts of jogging with walking. Then, I realized ok 13 miles this IS actually a huge distance and I don't want to wear myself out. So, walking it was after that.

I have to just say that I decided to actually get some before photos before we all started. In hindsight, this was a blessing as you will gather at the end nothing was left when I completed! I will explain more later.

So with all the start and finish photos captured, it was time to blend in with the crowd too with Animal and Scooby as below ;)

Here we are mile 1 - YAY! I wanted to be able to capture a photo at each mile for each as an achievement conquered. With the exception of mile 11 as it was raining and admittedly I was too exhausted to even cross the road at this point.

with Jade and Tom

Come on Jade - let's keep going......

Woohoo :)

all supporting Lily

Yes at mile 2, just another 11 to go ;)

with Tom

When I decided to go for a short burst of jogging, it always seemed to be on a slight gradient...madness, so I did have to stop shortly after.

Happy at mile 5

Gosh only 5 miles in and still a very long way to go. Running now or even attempting was just like a hell no as I needed too make sure I would make the finish. Time to save my energy/puff. So onwards we all trundled.

check this sign out ;)

Oops.. apologies here as I decided wouldn't it be fun to play peep a boo behind a tree. Any excuse to add like a kid and put fun into my day :)

Can't believe I was caught red handed checking out buses ;)

Time for another zany pose as below....

Somehow I don't have a photo for mile 8 - we were all running so fast it bypassed us! Actually, I think what happened was that we didn't see it maybe we were giggling and chatting away..then was like oh we are at mile 9!!
We are looking all happy and smiling - but what we couldn't capture what was an attack of hail stones just after mile 9 and it was horrendous pounding at us all. But, we kept going and thankfully it did stop!

time for a pint? no, photo and toilet stop on route :)

I can't even remember now at what mile, but, at one point the race director came to find me as knew I was struggling. he was very kind and insisted I get in his car and he would take me to the finish line. I was adamant this was NOT going to happen, and that I was going to continue and finish. Perhaps he was shocked by my reply but then I am Justine the fighting machine. I think the race time of 3 hours was over and he was also checking on me - I reckoned I would complete the half marathon in around 4 hours.

are we nearly there yet....shattered!

I was over the moon when both Mark and Nat came to find me and give some moral support fueled with sweeties too. It is difficult sometimes to keep going when your body is tired and exhausted. I was also thinking about Jade and Tom too as I am sure just walking 13 miles was tiring for them too. So seeing some extra people was a very happy moment, and gave me an edge to keep going.

with Mark and Nat

too tired to cross the road to be in the photo

well done Jade

I'm finished!

Every step now walking felt like a chore and I was hardly able to speak now, exhaustion had got the better of me. But, I DID NOT want to quit. Only one more mile to go and I would have completed the furthest distance ever!! My mind was fighting to keep going. My legs were hurting and everything hurting inside. My face was a picture I am sure and I know both Tom and Jade were worried about me. It was also nice to see another friend, Tracey in her car drive past slowly and talk to us. I was slightly jealous when she stopped and was eating a burger...ooh....I was hungry too.

But after resting my eyes on the mile 12 sign....time to get some more smiles in and get going. I CAN do this!!!!

had to act a fool here ;)

So approaching mile 13 and nothing was left at the end, no one was there to applaud our finish. I felt a tad deflated and was like, "Oh" and even the burger van was closing down.

The only thing left was the 13 mile sign on the floor ready to be collected and cleared away. So, I sat my bottom on the floor to capture how my day finished.

I am very grateful to Jade and Tom who stayed with me and to some other ladies part of Lily's legend who walked with us too.

It took just under 5 hours around 4 hours and 50 minutes. The duration itself totally exhausting. The last mile from 12 to 13 was a slow painful step, a pained face, and hardly any words from me. But, a sense of yes I have done it - was in my mind but after feeling deflated by the finish, I just wanted to get home to eat and collapse on my bed. I must stress that even though I say I am not a quitter....I do know if things got really bad - I definitely would have bowed out if I had too. I mean - there is only one of me and not another and especially living on spare parts.

Total exhaustion and a very naughty KFC dinner and a bed and I collapsed!

Rat Race May 2104

Now for part two of another 13 mile venture. I have to mention after the Brentwood half it took me about a week to recover even just from walking. But, I knew in May I was about to face something I wasn't even sure was in my capabilities. An event called, Rat Race in Stamford (Lincoln). It is the world's biggest assault course being 20 miles and 200 obstacles OR 13 miles and 150 obstacles.

Do you think I was going for the 20??? Noooooo chance! In my mind, I was setting out to simply walk the 13 miles and attempt as many of the 150 obstacles as I could.

Time to get my Grrrrrr on and I decided what would be more appropriate than a photo as a before in a bath. To which afterwards I would be needing a very good clean! Most of the Essex Boot Camp peeps were camping. I did initially think I would do so too. Then realized, that as this is a major event for me, rest would be essential!! I wouldn't be able to function if my body had no sleep the whole thing would be a struggle. Food and clean hygiene also vital to me - so not at risk with any bacterias sharing port a loos or if blocked - limited time for a shower on site. In hindsight this was a great decision as some struggled with lack of sleep, cold, and water supplies running out on the grounds!

Grrrrrrrrr

some of the EBC family

map of the 20 miles route!

A slow drive up on the Friday and helping at the grounds with people's tents, then about 5 pm I decided I needed to get some rest. I did have fun chatting with everyone the day prior and below with a couple of friends in Tracey's tent.

with Natalie and Tracey

A good night's sleep - porridge in the room and it was time to get this thing done and dusted. Come on let's do it!

At 9am we all lined up and were ready to go with a warm up by two men dressed in yellow all in one skin outfits, it was actually quite amusing. Again as with the Brentwood half a massive turn out from EBC all raring to go.

Whoop whoop here we go!!!! Everyone ran on and I was left on my own walking and wasn't even going to try to run, to make sure enough puff for the obstacles. I got to the first event going over some small blocks to which I had help by the marshal's to get over. Then to a car which was completely gutted out to which I crawled in one side and out the other - that was fun.

I carried on walking and was approaching mile 1 and heard people from the next wave come up behind me. Some were asking as I was plodding along if I was ok and some giving encouragement as if I was already struggling. Little did they know...an idea by my friend Carrie suggested having 'double lung transplantee' on the back of my top (which I think I'm going to do). Thanks Carrie :)

At about mile 5, I thought this was going to be extremely tough on my own. I was upset and thought it's easy to just pull out. But, then, my mindset kicked in and I thought - well if this if is how it's going to be - then so be it. I will get on with it and ask for help as and when I needed. I had done so at various points until reaching mile 5.

I had bumped into 3 other girls from EBC, Carrie, Sam, and Claire to which later on actually joined forces so to speak and we all rallied around together - helping each other. This really lifted my spirits and made the remaining 8 miles so much more fun!

I remember meeting them all again just after this obstacle a very high hill. I remember looking up and perhaps saying to myself oh my and sighing. I just looked and looked and thought there is NO way I can get up there on my own. I saw a chap and told him about my situation and said I would really like to do this - please help me. He was so kind and said hold my hand tight I will get you to the top. And it seemed like seconds and we were there! He literally ran and hoisted me up with him. I was so grateful and beaming with a massive smile. The way down was slow but amusing and that is when my journey continued shortly after with the 3 lovely girls.

photo from rat race website

The obstacles were so varied around Burghley House grounds with set themes, also lots of water obstacles - to which I needed to avoid.

Some photos below demonstrate some of the obstacles faced, just so many to try and write about about - how long have you got! ;)

photo from rat race website

photo from rat race website

Thumbs up as crawling under cargo nets, I think at one point I nearly ended up coming out at one side as was not looking where I was going...drunk cargo net crawls ;)

The banter with Carrie, Sam, Claire and I was so much fun and with other people that we passed by sometimes more than once ;)

We all had our own strengths and weaknesses but as a team jelled really well.

This photo shows how all 3 girls helped me to get over these haystacks. I probably would have walked around as its tough for me to go up. But, they were determined to help me and I was so grateful as I did make it!

Woohoo! at the top

What goes up must come down and here we all are resting on the last haystack...oh, but must we go on...yes!!

The girls left me at mile 12 for me to finish to mile 13 on my own, as they were going to finish to 20 miles and 200 obstacles. A fantastic achievement and I was so proud of Carrie, Sam and Claire continuing on. From around mile 10 things were getting tough for me and I wasn't sure how much longer I could go on. Exhausted an understatement and I had been out for so many hours. Walking being a chore almost like how I felt towards the end of the Brentwood half marathon. I was just thinking walk to the finish avoid the last items to do and finish. Keith (Carrie's husband was so supportive as were the other partners) and Keith was encouraging me to try and do the last obstacle - the wall. I really wasn't sure initially.

I did manage a few more obstacles before the wall as below, they seemed a bit of fun and not too strenuous.

what you looking at ;)

In front of the wonderful grounds

The photo below was the final obstacle to get over.......the wall with 3 walls. Gulp.......

photo from rat race website

I looked again at this, as I had the mountain hill, the haystacks and was thinking, Ohhhh dear. I needed help and lots of it. Help to initially get a lift up - but then help to pull me over each ledge of the wall. I had no puff to do this myself so told people helping me - that not only would I need to be hoisted up. But, to be really helped over! This seemed to work for the first two walls. I was hurting too as my arms were pulled.

The last wall I was almost in tears as I got stuck on the edge of the wall just underneath the scar of my transplant, and I screamed out so loud :(

I have a nice yellow bruise line by my scar still healing over a week later. The last wall was excruciating - but I am smiling now as I start my descent to the finish.

Ok, so I made the finish - and was totally done in - in myself as you see me here and I thought, I just can't get down now sitting on the edge.

I managed to raise a hand and wave, as suddenly I heard my name over the loud speaker to wave. It was announced who I was and about my transplant - it was such a nice touch and it was hard not to cry.

Some people were assisting me now to make the ground.

Looking like a rat with tufty hair - I was in shock and saying. 'I've done it...I've done it'........

I crossed the finish line and burst into tears, I was so emotional to those who saw me just after. I just found a space of grass and tired, exhausted, hungry, body shaking, ate a burger and drank a hot chocolate - then time to freshen up and rest back where I was staying.

So after learning of my results as a mammoth 6 hours 20 minutes to complete 13 miles and as many of the 150 obstacles as I could. I came in 890th out of 954 entrants. For the women who competed in the 13 miles, I came in 414th out of 452 ladies. I am no longer last anymore and seeing improvements slowly but surely.

I returned back to the room sharing with my friend, Kat, and as she was on her way out to party. I crawled into bed to flake out! After some hours I managed to join all the girls who helped me and their partners, for a huge Chinese feast. Then bed it was for me!!!

dinner and this was just the starter!

Yay! I did it!

So there we have 26 miles and that's a wrap. I get my hospital results from my scan in May and hope all is good. Until then, I will keep smiling and doing as much as I can. xx

Contact ME

World Transplant Games

Website used from 2005-2009

About Me

I am very lucky to be alive after a double-lung transplant in July 2006. I suffered the rarest lung disease called, Lymphangioleiomyomatosis (Lam). I kept fighting for my life and trying to breathe each time my lung collapsed (15 times). I used to be on 24 hour oxygen to help me breathe and also wheelchair bound. At one stage I ended up in a coma (3weeks) and remained on life support for almost 2 months. I had to learn how to walk again with a zimaframe, and start to re-build my life/confidence/strength up. I want to enjoy my life with the extension this transplant has given me. My journey post transplant has been challenging with health issues, but, I try to remain as positive as possible.